How many people with learning disabilities are really in inpatient services?

I’ve wittered on in too many previous blogposts about what the statistics are telling us about the number of people with learning disabilities and/or autism in inpatient services in England, and how NHS England claims of reductions look to me somewhat premature. So, with Transforming Care Plans springing into action, is the picture finally looking brighter? (as opposed to the future being orange, which as we now know does not mean brighter except in a malfunctioning TV kind of way)

Well, in this blogpost I’m going to share statistics that lead me to think the picture is much worse than I thought. New analyses from the good people at NHS Digital (together with some old analyses from them that I shamefully missed, thank you to Tim Williams at Reading University for drawing my attention to the relevant table) strongly indicate that there are many more people with learning disabilities and/or autism using inpatient services than NHS England typically mention in their reports of progress.

Compared to five years ago, we generally now have much better information about people with learning disabilities and/or autism in inpatient services, and there are now multiple sources of relevant information. The one that NHS England regularly cites is the Assuring Transformation dataset, updated monthly by NHS Digital. This reports information provided by commissioners (CCGs and NHS England specialist commissioners) about how many people with learning disabilities and/or autism they’re paying for in inpatient services (along with lots of other information about them and the service people are getting). The Assuring Transformation dataset (with some wrinkles due to retrospective reporting) generally reports 2,600-2,800 people in inpatient services.

From 2013 to 2015, there was also the Learning Disability Census, which collected detailed information annually from inpatient service providers on how many people with learning disabilities and/or autism were in inpatient services on a particular census date.

More recently, there is the Mental Health Services Dataset (MHSDS), replacing and adding to the previous Mental Health and Learning Disabilities Dataset (MHLDDS), which provides detailed monthly information from a wide range of providers of mental health and community services.

Just before Christmas (are they not allowed holidays?), along with other analyses of the MHSDS, NHS Digital produced a report comparing data from the Assuring Transformation dataset and the MHSDS, based on figures for September 2016. 

At the end of September 2016, Assuring Transformation reported 2,600 people with learning disabilities and/or autism in inpatient services. At the same time, the MHSDS reporting 3,590 ward stays of people with learning disabilities and/or autism in mental health/learning disability inpatient services.

Why the difference? Much of it may be that many people with learning disabilities and/or autism are spending relatively short amounts of time in general mental health inpatient services, which would be picked up by mental health service providers in the MHSDS but is not picked up by commissioners in Assuring Transformation. Consistent with this, for some NHS Trusts, many more people with learning disabilities and/or autism are reported in the MHSDS dataset than the Assuring Transformation dataset (e.g. Nottinghamshire Healthcare 90 people in AT vs 315 people in MHSDS; West London Mental Health Trust 15 vs 140 people; Oxleas 25 vs 120 people; Mersey Care 155 vs 235 people; Rotherham, Doncaster & South Humber 35 vs 185 people; Kent & Medway Partnership Trust 30 vs 265 people). 

I’m more puzzled by a small number of NHS Trusts where more people with learning disabilities and/or autism are reported in the Assuring Transformation dataset that the MHSDS, for example Hertfordshire Partnership Trust (110 people in AT vs 80 people in MHSDS) and Coventry & Warwick Partnership Trust (75 people in AT vs 5 people in MHSDS).

There are similar differences in independent sector inpatient provider organisations. Some of the biggest organisations report much larger numbers of people with learning disabilities and/or autism as inpatients in the MHSDS compared to Assuring Transformation, such as Partnerships in Care (275 people in AT vs 390 people in MHSDS) and St Andrews (205 people in AT vs 305 people in MHSDS). Is this because these organisations have people with learning disabilities and/or autism in branches of their inpatient services not identified by commissioners as learning disability/autism inpatient services? 

Again, there are some organisations reporting higher numbers of people with learning disabilities and/or autism in Assuring Transformation than in MHSDS, such as the Priory Group (50 people in AT vs less than 5 people in MHSDS) and Cambian Healthcare (135 people in AT vs 30 people in MHSDS). Why are these inpatient services not counted as mental health services by these organisations (which return information for the MHSDS)?

This is just information from a single point in time, September 2016. I shamefully missed, until Tim Williams drew it to my attention, that NHS Digital did a similar analysis of Assuring Transformation data against data from the Learning Disability Census, for September 2015. In September 2015 there were 2,625 people in inpatient services according to Assuring Transformation vs 3,000 people in inpatient services according to the Census. Only 2,140 people were in both datasets, which by my calculations (excluding places commissioned by organisations outside England) means that in total there were around 3,400 people with learning disabilities in inpatient services in September 2015.

What conclusions do I draw from this?

1. Most obviously, there are likely to be many more people with learning disabilities and/or autism using ‘specialist’/mental health inpatient services than Assuring Transformation makes visible – something like 3,500 people in inpatient services at any one time rather than the 2,600 people reported by commissioners in Assuring Transformation.
2. Equally obviously, commissioners’ (and possibly providers’) reporting is all over the place, as evidenced by the struggles of Jenny Morris andJane Basham to get any sensible information about inpatient services from theirlocal commissioners or service providers (Norfolk & Suffolk NHS Foundation Trust report 10 people with learning disabilities and/or autism as inpatients in Assuring Transformation, but 50 in the MHSDS dataset, for example). Are these discrepancies pure cock-up or partly some form of gaming relating to meeting Transforming Care targets objectives?
3. Some of this information suggests that many people with learning disabilities and/or autism may be using generic mental health inpatient services rather than ‘specialist’ learning disability inpatient services. This group of people seems relatively invisible to commissioners and to the NHS England Transforming Care programme, and what’s happening to them needs to be much better understood.